April 30, 2011

Sigh. I (Robert) just typed out a blog post and clicked "publish," and it gave me an error message and told me to try again. Ho hum. It's late, we're tired, so I apologize, but you're going to get a very abbreviated version. We'll elaborate later on.

-We got to hold Clara some more today. She did OK, but not quite as good as she did yesterday. She's working pretty hard to breathe still, but doesn't look uncomfortable or worn out, so we're hoping that she gets over that without incident. -Chest Xray was a little hazier today, so they're increasing her lasix a bit to try and squeeze those last bits of extra fluid out of Clara.-Clara got to hang out with all four of her grandparents today! Clara's Mama K and Daddy Bob (Hardy) drove up from Georgia early this morning to see (and hear!) their grandbaby. We wanted so badly for them and her Big Daddy and Sweet Mama (Davis) to be able to hold her, but since she wasn't doing quite as stellar with being held, it wasn't in the cards for today. Don't worry, I get the feeling they're going to more than make up for it when she's ready.-Chrissy's birthday was today! So happy she got her birthday wish to hold Clara, because she deserves it. She's awesome. What a great mother. What a great wife. Clara, you and I hit the jackpot, baby!

We took lots of pictures today, but they take forever to upload and it's late. But I WILL leave you with a couple of videos from yesterday that finally finished uploading in the wee hours of the morning:

The first is the anticlimactic extubation from yesterday:

And the second is a tear-jerker; Mommy holding Clara for the first time!

OK, have a wonderful night everyone. We love you and are eternally grateful for all of your prayers and encouragement. Continue to praise God for the ongoing miracle he is performing in our daughter's life.

April 29, 2011

Today was a banner day for Clara, and therefore for us. We had heard some rumblings early this morning that they may want to extubate today, but then the respiratory therapist said her chest x-ray looked a little wet and that we might have to postpone. I was of course hopeful and excited that it was a possibility, but also understanding that it may not happen and willing to be patient and wait for the right timing. But when I went to rounds this morning, they were ready to give it a shot. Things moved quickly. It was about 11:30 at that point and I had an hour or so to eat lunch and pump before they wanted to extubate. Extubation went well. Clara is now breathing all on her own, and only receiving some oxygen through her nasal cannulas. Other than that, her lungs are doing all the work and they are doing it well. I was expecting to hear a cry right away, but it took a few hours before Clara really found her voice. She was so unhappy the hour or so before extubation... they had turned the pressures off on her ventilator and I think she was just really, really, really ready to be done with that tube. As soon as it was out, she settled down quickly and all her numbers began to return to normal. In fact, her post-extubation blood gas was one of the best she's had! She likes being free.

After the excitement of mid-day, Robert and I stepped out for a late celebratory lunch and gave Clara some time to sleep and adjust to her new nasal cannulas (through which she is receiving oxygen). When we got back to the hospital, we held her for the first time. She cried her new hoarse cry for just a moment as we lifted her out of her bed and into my arms. Then, she stopped crying and our eyes just locked on each others' for a few moments. After a little bit of rocking, she soon fell asleep. Words cannot describe the fullness of my heart. I have loved deeply, but never have I experienced the kind of love I have for Clara. A parent's love is really something special and after a long 37 day wait, having her in my arms made my heart feel like it would truly explode. There is nothing better. Nothing.

I held her for a few minutes and then handed her off to Robert for his turn. (I had to go pump, of course.) When I came back, I took her back again and Mom and Robert left the hospital. I held her for almost two hours this evening, all alone, while she slept. What precious, sacred moments those were. We are so thankful that she was happy, peaceful and healthy in our arms and are looking forward to the many, many more hours that she will spend there.

I could write more, but pictures speak louder than words, right? So here are the first images of Clara in her parents' arms. I know I'm posting way too many, but I'm not feeling very discerning (and if you can believe it, this is really just a fraction of what we took....)

Clara after extubation. No more breathing tube!

Check out my new nasal cannula!

Melissa hands a crying baby over...

First moment in Mama's arms

Fussy at first....

But not interested in that paci in my left hand....

And settled and happy at last. Both of us.

Wrapping up in her special hand-knitted prayer blanket

Sometimes you get to open a birthday present early..

Family photo

Good things come in small packages

Adoration

In Daddy's arms

Daddy kisses

Love

Exuberance

Peace

Comfort

Here are a few of the wonderful staff in the NICU who have loved Clara well and helped give her the support she needed to make it to today!

Dr. Welch, this week's neonatalogist attending who has helped Clara make the big steps this week to get here today!

Nurse Melissa

Nurse Tara

Spit bubbles

Here's a video of her sweet new cry. It is the most beautiful sound:

I think before today I have known in my head that she would overcome this and that we would get to bring her home. I have certainly believed it in my heart. But I have not known it in my heart until today. There was something about actually having her in my arms that gave me a deeper peace than I have had the past 37 days and a truer sense of certainty about her fight. She will win. This story is going to have a happy ending.

I don’t know why. I believe that it is because of the thousands (millions?) of prayers that are being said on her behalf. I truly do believe that it is those prayers that have saved her life. But I also know that is not the way that prayer works. We don’t just ask for things from God and then get them. He can (and does) say no to things that people ask for all the time. Good, faithful, deserving people. People with much more trust and faith and goodness than we have. So, I struggle with trying to understand why God is answering these prayers in the affirmative. I remain grateful and humbled. We have seen God answer specific prayers over and over and over again in Clara’s life. Day after day, the things we ask for you to pray for are coming true. Right down to the chance to hold her today, which I know so many of you have been praying fervently for. I can’t say enough how thankful I am to you for praying those prayers and to God for answering them. But I still don’t understand: “why us?” There are lots of other people out there suffering who are not getting the answers they are praying for. I don’t understand why we are. But all I know to do is continue praying with hopeful expectation and continuing praising God and making sure that you all continue to hear us say:

TO GOD BE THE GLORY.

Today, forever and always. No matter the circumstances. To God be the glory.

April 28, 2011

Clara was much happier today! We think she might have her days and nights mixed up because she was awake and alert (and happy) for much of the night last night and slept for a good bit of the day today. We'll work on switching those around after we get her breathing and eating on her own though. Just a few changes for her medically - We weaned some more drugs (Hydrocortizone by another 10%, one less dose of Lasix, and a step down on her Morphine). She's back to her birth weight, or close to it, so we're no longer calling her 'wet weight' and 'dry weight' two different things, although she has a bit more diuresis still to do, we think. The chylothorax appears to have resolved; we'll pray it stays that way! We increased her feeds to 10ml/hr. And we've weaned several vent settings today. She's very very close to levels there for extubation. She was not grouchy or fussy today and tolerated all of these changes very well, so we are super proud of her!

She's been sucking on her ET tube so much that today we tried giving her a paci, just to see what she would do. She liked it! I'm very encouraged by that since she hasn't had to use that sucking reflex yet in her five week life. I'm hoping that since she still seems to remember how to suck that feeding won't be as much of a battle as it sometimes is with CDH babies. There's still swallowing and reflux issues, but hopefully she'll conquer those too when the time comes. This morning they moved her IV that was in her hand to her foot so for the first time in her life bothhands were free! That was fun. We also played with a new toy that we got her. As much fun as monkey, lion and hippo are I thought it was important that she learn about some other ecosystems too. The new toy is pond creatures: frog, fish, dragonfly/butterfly (we had much discussion today about which it really was) and a turtle. Clara approves. If she continues her progress as she has been, and no other obstacles pop up, I think that we will have her in our arms very soon. I'm still hoping for extubation this weekend.

Here are just a few photos and videos of today.

Sucking on her paci!

I always swore I wouldn't put these big giant headband bows on a bald baby, but here I am. I can't resist. She's just too precious.

Checking out her pond friends...

She studies them carefully!

Snug as a bug in a rug!

I’ve said this before, but it bears repeating.As I was driving to the hospital this morning, I caught myself feeling a deep sense of joy, contentment and excitement to be heading to the hospital again. I thought to myself how strange it is in many ways.I believe that God has planned for me to be a mother and I believe that he has given me a strong desire to have this new role.I’ve longed for this for a very long time.But I never thought it would look like this and I recognize that by the world’s standards and expectations that I should be angry and disappointed and sad and frustrated.But I just love being Clara’s mother.I was so excited to be driving to the hospital this morning, knowing that I was going to have another day to spend with her.That level of joy and contentment, even amidst difficult circumstances, can only come from God.Towards the end of his life, Paul writes in Philippians about learning how to be content in all circumstances.“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus… for I have learned to be content whatever the circumstances…. I have learned the secret of being content in any and every situation… I can do all this through him who gives me strength.”(Philippians 4).I understand what he means, because I am overwhelmed with feelings of joy and contentment right now myself.But I don’t know that it is something I have learned as Paul says.I think it’s just been given to me as a part of God’s amazing grace and by the prayers of so many.

Please continue praying for Clara's healing. Pray that she will be able to successfully extubate and take over the work of breathing all on her own. Pray that her lungs will continue to grow and inflate and that they will give her the strength she needs to reduce her pulmonary pressures. Pray that she will continue to tolerate feedings and that as we move to oral feeds in the coming weeks that she will learn to eat on her own as well. Pray that the chylothorax will not return and that she can continue to wean her sedation drugs. Most of all, continue to thank and praise our God who has made Clara so beautifully and has planned wonderful things for her life. He is the giver of all good things, including joy, contentment and peace.

April 27, 2011

Clara had a fairly good day medically. She got her IJ triple lumin line taken out of her neck and it looks so much better. She did not particularly care for the ordeal, her blood pressure and heart rate went nuts and she was crying the whole time. But you know what? If you pulled sticky, scabby tape out of my hair and then tugged on some crusty stitches, I don't think I'd like it either. We also took off her milrinone so that's one more PPHN drug that's gone. It's got a long half-life (which means it lingers in your system for awhile), so she's having another echocardiogram on Monday to see how she's doing once we're sure it's gone. We also changed her ET tube from being taped to a neobar to give her face a chance to breathe after having icky sticky tape on it for so long. Unfortunately, I'm not really sure she's wild about it... the placement is a little different and this afternoon she was gagging a lot. My suspicion is that it's the tube. We also began weaning her sedation med today. I have a feeling that's going to take a long time... We resumed feeds today (with Enfaport formula) and are hoping that the chylo won't return so we can quickly increase those and get back on the feeding track. She did spit up some this evening, but I think it's because she was gagging on the tube, not because of the formula. So I really really hope we won't discontinue feeds or change anything about that plan. We're back down to her vent settings from before the broviac procedure yesterday. Still need to go down a bit on the oxygen and maybe the rate and pressures a little bit too.

She was alert and awake and happy a little bit today, but mostly when she was awake she was a big fussy-pants. I'm not really sure what her issue was. Some theories: itchy from the morphine (we gave some benedryl this afternoon), more awake and aware of her ventilator which she is really ready to be done with, hungry since we stopped feeds for a couple of days (I swear I heard her stomach growl this morning - we Hardys do not like to be deprived of our food), hot at one point (?), a dirty diaper (she's really a princess when it comes to a dirty butt), tired from being awake a lot last night, or just plain baby fussy. I know it's normal for babies to cry and fuss and be unhappy. I don't mind her acting like a normal baby, but it's really difficult to watch the silent cry, not be able to hold her, and worry that she might be in pain or that her fussing could lead to desating. For the most part today she didn't desat when she was crying - there was only one episode of that this afternoon and that was when we knocked her out with some benedryl and extra versed and she recovered quickly. As of this evening, she is sleeping peacefully and sating high.

We're keeping on keeping on. (That sounds normal when you say it, but looks weird when you write it.) Smaller baby steps the past couple of days, but we're still taking care of things that need to happen for her to get better. I'm growing a little eager to extubate, but certainly want for her to be ready before we do it, so once again I'm trying to work on this whole being patient thing.

Oh! There's this. I "held" her today. Okay, it wasn't a real hold. But I lifted her from her bed ('light as a feather, stiff as a board' style) for the nurse to change her blanket from underneath her after she spit up. It was just a few seconds, but at least I had her in my hands...

Here are some photos of Clara at five weeks:

Today's hairbow is brought to you by the letter U for Umbrellas. April Showers bring May Flowers, right?

Clara's first real tear. That's from pulling the IJ line out.

Baby with tear. So sad.

A brief happy moment, hanging with her jungle friends

"BLEGH! I hate this tube! Get it OUT!"

See that hand wrapped around her tube? She really wants to pull it out. Smart kid.

This is the sad face we saw most of the day today. Actually this one isn't even as bad as it was. But I told her, "Hey, it's okay. Sometimes a girl's just gotta cry."

Today on "Parts of Clara I think are beautiful":

dainty long eyelashes

And sweet little lips and tongue.

Prayers for Clara:
A happier day tomorrow, filled with more steps forward like continued weaning of sedation, increased and tolerated feeds, no return of chylothorax, no more gagging on that tube, reduced ventilator settings and general tolerance of all of the above! Continue to pray for her pulmonary hypertension which is her biggest medical concern at this point and we have taken away her big PPHN medications (flolan, milrinone and nitric oxide). Pray for her team of caregivers including nurses, doctors, nurse practitioners, residents, fellows and physicians. Pray for her tired mommy and daddy who continue to try to pace themselves for this marathon when sprinting is maybe more my style (metaphorically speaking. I, of course, do not actually run sprints or marathons!)

Today Sumi, one of our favorite respiratory therapists from the ECMO days and also one who continues to care for her in the NICU came by to check on Clara. Mom asked her if, a couple of weeks ago, she thought that we were ever going to make it to where we are now or if she thought we were going to lose Clara. Sumi answered by saying, "I had faith that she would get here. I think it was the prayers that really helped." It was her way of saying, "Medically, no. But because of love and hope and many prayers, yes." We continue to stand in awe of this miracle. Thanks for being the team of prayer warriors who have faith that we'll bring her home too. Your continued prayers will make that a reality someday, too.

For where two or three gather in my name, there am I with them.” Matthew 18:20
Thanks for gathering with us and inviting God into this sacred shared space.

April 26, 2011

Clara is The Brave Little Toaster Baby. We ended today (at about 6:00PM) with her fourth surgical procedure in as many weeks - today they placed her broviac line in her groin. She was a champ! It did require a trip down to the O.R. which is always a bit of an adventure when you're dragging an IV pole, a crib and bag ventilating your whole way down and back. And she was put under some anesthesia to paralyze her, but the whole trip was only a little over an hour and she was already waking up from her sedation and starting to wiggle some when I left the hospital at about 8:30 tonight. Her ventilator settings were all back where they started except for her rate which they'll slowly wean back down tonight as she continues to wake up some more and she was sating 100 again, just like she had been all day.

Up until that point, it had been a pretty low-key day for Clara. We couldn't really move ahead on much else until this procedure was taken care of, so she mostly just got to rest and build more strength. She was awake and alert a lot, but also snuck in a few naps here and there. We talked and read and sang and she continued to keep her watch over that sneaky trio of monkey, hippo and lion. Her oxygen saturations stayed high all day long and she's tolerating movement and stimulation beautifully. So, we may even begin to think about starting to wean her sedations some tomorrow. The last drip IV she has (besides sedation medications of morphine and versed) is milrinone. It's a very low dose of 0.25, but we're weaning it to 0.12 tonight and then it will come all the way off tomorrow. We'll have another echocardiogram in 3-5 days once it's all completely out of her system to make sure she's doing okay without it. We were going to resume feeds today because her chylothorax looks like it has resolved, but it had to be put off until tomorrow because of the broviac procedure. So, we will start that up tomorrow morning (on the Enfaport formula I mentioned yesterday) and hope that there are no signs of the chylothorax returning. If it stays away, I think extubation could be in our near future!

There's the short story on today. A hot bath is calling my name after an eleven hour hospital day, so I'll just wrap up with a few photos of the amazing shrinking baby.

morning nap

snoozing soundly

She's been sucking hard on that ET tube. I think she's ready to extubate!

sweet red polka dots

toesies peeking out from her blankets

so precious

"Did you say you're taking me to surgery again??"

And the "We Love Brenner Children's Hospital Staff Spotlight of the Day is............" MELISSA! She's been a great nurse to Clara and took excellent care of her before and after her surgical procedure today. Thank you, Melissa!

Prayers for today:
- We've got less than a kg left to lose, but still need to finish diuresis so we can be done with the Lasix and be back to "dry weight" only! Her chest x-ray was a little wet again today, so we need the last of the fluid to scram!
- Successful re-starts of feeds and no more chylothorax
- Weaning of milrinone tomorrow and no worsening PPHN once it's gone
- The beginning of weaning off of sedation... we've got a long way to go until those are all the way off
- And on the horizon.... extubation and oral feeds

We are continually amazed, awed and incredibly thankful for the blessings in our lives. We are so thankful for this beautiful girl, the staff at Brenner and the care they're giving her, the support and love we've been showered with from friends and strangers across the world, and most of all for God's grace and love and His active presence and involvement in our lives. May He be glorified!